Entrenching hypothyroidism?

Hormones
21

Hi Clive, I just noticed your message.  So your doctor did test for T4 as well as TSH.  Free T4 is the one to observe.  The thing is .. if you feel quite well and this reading has shown up I see no reason to start taking medication but as the lab results for free T4 show an anomaly you will be wise to keep an eye on the condition in case it worsens in the future and then you would 'definately' need to take medication to continue to have a good quality of life.  So if you research and keep in touch with thyroid matters you will be able to better speak for yourself if that time should come. The thyroxine is a powerful hormone and I know from experience that only 'you' will know when you are taking the 'right' dose.  This can be a matter of trial and error .. bumping the medication up or down and obersving the effect it has on you.  Too little can leave you fatigued and with a foggy brain.  Too much will make you feel aggitated and jittery.  It can take weeks to know if the dose you are on is the right one for you.  One test that you can do for yourself if you think you are becoming hypothyroid is to take your temperature in the morning before getting out of bed as soon as you wake up.  Keep a record.  My temperature dropped to 35.1 on my morning readings and I was freezing cold all day long .. I became very, very ill because  a doctor dropped my 100mcg Oroxine to 75mcg per day - I now realise that this was a massive drop for me .. it was 1/4 of my daily supply of thyroxine and when I was on my slide down into hypothyroidism the same doctor dismissed my complaints and sent me away with antidepressants.  I was virtually at deaths door before I realised what had happened to me.  More blood tests were ordered and once again the doctor said 'your results are fine' and gave me a broad smile.  My TSH was now 2.4 well within so called 'normal range' and the paperwork was 'perfect for my doctor' but I was sick, sick, sick.  My normal happy TSH was 0.08.  I took matters into my own hands and put my medication back up to 100mcg and I steadily improved.  I feel I have lost a year of my life.  Just to clarify why my TSH is normal 'for me' at 0.08 .. in 2010 I had a bowel resection and this has changed my lab results - no doctor has been able to get their head around this fact .. except my surgeon who did the op. and she said the problem stems from absorption issues.  She suggested that I might actually have to take a small amount extra of Oroxine.  I'm keeping that in mind.  Sorry for typing this all in one block I tend to do this when typing in these small boxes smile  Also, do ask for a copy of all your thyroid tests and the tests are best done through the same laboratory each time as each lab have their own ranges.  In the meantime be sure you use Iodised salt - the thyroid needs it to work properly, you may need a vitamin D supplement and your ferritin levels may be within range but 'low' this can cause joint pain.

Rosalie   

22

Dear Clive, Rosalie, Doreen and Jenny,

"Entrenching hypothyroidism" is a very interesting and topical point of view.

We all criticise the current mainstream medical treatment and diagnosis for the lack of personalised approach. We think each of us is unique and, although there might be some degree of "standard and general" approach, we should be treated individually.

Rosalie, your example of what should be a normal TSH reading for you is great! But why only few (if any!) practising doctors would agree with that?! Were they not tought genetics and biodiversity in the uni? Or is it some sort of "brainwashing" which comes with the profession?

Clive, as other forum members have already advised, I don't think you should go "on the pill" based on the results of a couple of tests and considering that you are asymptomatic. Have you had similar tests in the past to know what could be your "normal base line"? Maybe, as in the case with Rosalie, your current readings are normal for you despite the fact that they are outside of what is considered the norm. Yes, my advice would be as the others: just keep an eye on your health and have regular blood tests.

As to "entrenchment" theory, it works if your gland is temporarily out of the norm. Well, in my opinion. But when the decline in the performance is irreversible for many reasons, then we are facing dilemma: to try and slow down that decline by refusing hormonal replacement therapy, or expedite the matters by taking drugs but regaining the quality of everyday life.

I am currently facing this dilemma. Half of my thyroid was removed 2 years ago and immediately I felt very symptomatic. Still feeling hypothyroid. Yet doctors say "your thyroid values are within the range, therefore thyroid function is fine). And there's nothing I could do to convince them otherwise. Should I abandon the idea of getting any official treatment or should I self medicate and resign to the fact that it's going to be for life?

I decided to choose the latter. And I am very hopeful that it's going to be a supplement therapy (with natural dessicated thyroid) rather than replacement one. The difference is in the dose. I believe that if you are not severely hypothyroid, then there's no need in the full replacement dose in the midlle- to long-therm.

Many thanks for all your posts and comments - it's so important to know that you are not on your own. Good health to everyone!

23

THE ISSUE OF IODINE

Like all diet/health issues, the more one studies this issue, the more complex it appears (which I find interesting in itself). Here is a link to a very comprehensive article. It is long, but it is very definitely significant to hypothyroidism:

http://www.westonaprice.org/modern-diseases/the-great-iodine-debate/

Here is a single quote:

''Based on an iodine/iodide loading test developed by the author to assess whole body sufficiency for iodine, the amounts of iodine needed for whole body sufficiency and optimal physical and mental health are 250-1,000 times higher that the amount of iodine needed to control cretinism, hypothyroidism and endemic goiter.”''

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ON DEATH AND ILLNESS

Hi Doreen

I am not sure if you are referring to me or my father as a ''poor soul'', but no, I do not find my father's conditioning distressing. Neither do I find my own condition (including illnesses I have not mentioned) distressing, they do not bring stress or mental suffering. Neither is the prospect of death, for myself or my father, a fear-inducing matter. I add, this is not the result of any religious belief, it is not based on ''faith''.

I do not know if this is the place to go into this, but I felt some reply to your mail was called for.

 Why should one resist what is? Why should one treat disease like an enemy to be battled with? (which does not mean that one does not take appropriate physical action). And does not such battle, such conflict have a negative effect on the body, and on others?

Of course sometimes sadness is felt. There may be empathy with the feelings of the other. It is not that one should not grieve, or should grieve. I am not telling other people how they should respond to the challenges of their lives. But for me, being free of the ideas of grieving, free of the necessity of conforming to the commonly accepted reality of what constitutes grieving, of what one ''should feel'', leaves the freedom of true feelings and action.

Surely it is insane not to accept 'what is'? To resist the truth of what is? This is most clear when it comes to death. Death is the one certainty of our life, the one inevitability. Why should it be resisted? Why should it be a cause of fear and suffering? Death is inseparable from life anyway. We know that all forms wither away, die, from the tiniest creature to great galaxies.

In acceptance of what is, there is great beauty and truth.

I am grateful for this learning that life has put in my way. And I welcome disease, illness as a honoured guest in my life.

Clive

25

Dear Jen00,  I think I replied to a previous comment that you wrote about your thyroid lobectomy and commented that removing half of ones thyroid and not offering any substitution in medication is 'crazy'.  Afterall .. would a doctor whose leg had been removed not be offered an artificial limb a wheelchair or at least a crutch?  Why do they think half a thyroid gland is capable of doing the work of the previous complete gland.

You mentioned that you hope that your decision to take the natural dessicated thyroid would be a 'supplement' rather than a replacement one.  I must admit I am unsure about that reasoning .. as what I have read when researching is that one may start off on a certain low or supplemental dose but it will need to be increased over time.  My daughter is going through exactly this situation at the moment although she has not had any surgery on her thyroid gland.  An ultrasound scan determined that she has about 40 nodules on her thyroid gland and has been unwell for years.  She is taking 75mcg Oroxine at the moment which she has had to obtain by unorthadox means because doctors/endo's will not treat her until her numbers drop below the 'normal' range.  She is just .7 within the lower end of 'the range'.  She is incredibly improved by taking the 75mcg.

I don't think one should worry too much about resigning to the taking of 'medication for life'.  I prefer to think about the quality of life that the correct medication will bring.  I have been taking Oroxine for 28 years.

I hope you will feel better whatever you decide to do.

Rosalie

 

26

Hello Rosalie,

Thanks for you reply and for the reply to my previous post (sorry, couldn't reply straight away at the time!).

I agree wholeheartedly with you on many points: "strange attitude" of the medical profession towards many obvious hypothyroidism scenarios, necessity to outsource and self medicate and, finally, the importance of the quality of life.

I said I believe in a supplement therapy theory as opposed to the full replacement one. Unfortunately, it's more of my speculation (wishful thinking?) rather than solid knowledge. I thought if I start with a really low dose and phase in very small increments during a relatively long period of time (months versus weeks), my TSH shouldn't drop drastically. Hopefully, it will bounce back after initial dip, keeping my endogenous thyroxine production at initial level or very close to it. So, in theory (alas, only in theory at the moment!), my remaining lobe shouldn't go into a "lazy" mode but carry on as if nothing has happened. At the same time, I should have more circulating thyroid hormones in my blood at the expense of the exogenous/ingested thyroid supplement. And I should start feeling normal again! biggrin) My intention would be not exceed the equivalent of 25 micrograms of T4 until my theory proves wrong in practice.

Currently I am undergoing more blood tests and scans, since more medical problems have been revealed. I want address those issues first and see whether my hypothyroid symptoms can be relieved. If not, I'll be ready to test my beautiful theory... and face a fiasco probably.biggrin

All the best to you and your daughter!

Jen

27

Forgive my delay in response to your réply - my iPad is picking up the fact that i am writing from Spain, and is offering rubbish words if I dont check carefully!  Many thanks for your thoughts on foods and how to strengthen the thyroid.  I have no timé at the moment to respond moré thoughtfully but will do so later also with my own thoughts on food, but I entirely agree will your basic ideas which aré much in líne with my own.

28

What I am investigating at the moment is that the underlying course could be a shortage of iodine/iodide in the body. Some doctors think, with some evidence, that we need far more than the RDA of 150 micro-grams. There are similar ideas about vitamin C. 

Clive

29

I have been underactive for several years after Radio iodine treatment for over active thyroid. From what i have learned, not taking your thyroxine for 3 days will make no difference to your thyroid function atall, This is because it takes approx six week to make a difference to your body and blood results when there is a dosage change. 

30

Hello Clive,  I will read ALL the replies but firstly must ask why people are being medicated without typical symptoms, and if you are comfortable with you health.  Most of us with this debilitating condition can't get properly prescribed/treated.

Rgards.

31

I would dcinitely ask the GP what symptoms he is supposed to be treating. Some people are Hypo and don't know it... unlike me😞

32

Yes Doreen it can be hereditary. 😉

 

33

It seems natural to ask why people cannot get properly prescribed/treated? And what fraction of so called sufferers are in this situation? Is there something fundamentally wrong with the treatment, with the whole concept?

Another question that has occurred to me is: how much natural variation is there in the T4 and T3 hormone levels in the body, on a daily or weekly basis? I would think before being prescribed life-long medication, there needs to be 3 identical tests, separated by a few weeks.

I am not sure what you mean,RKD, by "am I comfortable with my health''. I attend to it, but It does not cause me stress; I do not worry about the future.

regards

Clive

34

Hello Clive,

I was hoping you could provide an update. Did you stop taking the medicine? Your theory : "In the absence of medication I can imagine that the thyroid swings back into normal operation" is of great interest to me. I am curious about  your situation. Did you stop your medication? How are you? 

Below  I will give some details about my situation but the quick summary is that I have borderline hypothyroidism and I am currently not taking medication, against doc orders.  

A few details about me. 2 months ago thyroid test indicated borderline hypothyroidism and an ultrasound of the left lobe of my thyroid showed it to be very diminished-- (or maybe it was always small?) No nodules.  The doc  wanted me to try taking levoxyl for 6 weeks (she gave me free sample pills) and then get re-tested. I thought it was strange- I read that hypothyroid patients have fatigue and yet I have very bad insomnia and I am quite alert. (additionally I am much more athletic than my peers- I'm a female-age 56)  I never drink caffiene -I'm pretty energetic. Anyway- I followed doc order's and I cut the pill in half and I took  the Levoxylin pill early the morning . That day I discovered my insomnia issues were far worse- and they were already bad.  That night I could not sleep at all. Zero sleep. The next day I felt terrible. Even though I should have followed doc orders- I did NOT take another dose that next day.  I finally fell asleep around midnight on the second evening after taking the half pill.  I complained to the doc by using an online tool and she said I could cut the half dose in half and take that.

I decided against taking any more pills. I am researching about diet and nutrition and I think maybe will get my blood retested eventually. I probably need a new doctor since the endocrinologist doesn't like how I disobeyed her doc orders.

I am NOT free of symptoms but oddly-my symptoms do not fit the normal hypothyroid profile.Biggest symptom: really bad insomnia. This insomnia is NOT stress related and I am keenly aware of proper sleep hygiene. Hypothyroid patients usually have hand tremors and I do have that. They also usually have joint pain and so do I -X rays show I have degenerative joint issues- but again, I am quite athletic/active.  

I have been very slim my whole life until the last few years and I'm getting fat in my tummy area. My theory is that I now have  too much cortisol and hence the insomnia and middle section fat.  

Genetics are not my friend: My dad was afflicted severely with ankylosing spondylitis- an auto immune disease - --however I do NOT have that- my sed rates are normal and the primary care doc screened me for lupus (not sure why) and she said I didn't have that. 

So there you have it- much more detail than you probably want, ha! It seems you are my captive audience, lol...

My basic question is about you. I wonder if you stopped your medicine and how you are faring. This is an old thread , so I'm not entirely sure  you will get this or I'll get a reply. If you can reply, thanks. Best regards to all on the thread.